Are my Oncologists Too relaxed?

Hello Mehrdad and welcome! Cancer sure sucks, huh? But you came to the right place-there is so much good information on this board.

My husband met with the tumor board at Stanford and had surgery there but we ultimately switched to UCSF for chemoradiation because it was closer to our home, in Berkeley. Stanfdord is an excellent hospitai and is very up to date with hpv head and neck scc.

I see that you have a few issues out there. I can share some of my thoughts with you: First of all, are you not having surgery to remove tumor or lymph nodes? If not, at least you wont have that delay, which is 5 weeks, and many people have that first, so that is in your timeline favor, comaparatively. 

It seems to me that you should have a dentist who is familiar with treating post-radiation patients weigh in. As great as your dentist might be, it's probably something he doesn't know enough about. It may be no big deal to just leave it for now. I think my husband met once (post radiation) with a specialty dentist at UCSF to do a look-see but now just goes to his regular dentist. Perhaps stanford has a radiation-familiar dentist. If so, maybe they could just review your x-rays to save time? I can ask my husband when he gets home about the specialty dentist if you want a name.

As for number of rads: my husband had 33, instead of the usual 35. I know that with HPV+ SCC HNC, the trend is to radiate a little less as it is proving just as effective and even that small reduction can save you some pain and long-term effects. However, it does surprise me to hear they are recommending a reduction since (presumably) you have affected nodes on both sides, which is fairly aggressive. If you are concerned, I would direct my question that way: "why radiate less if I have lymph nodes affected on both sides?" They will have an answer for you.

My husband's treatment was like this: noticed tumor on tounge (lymph nodes never actually swelled, though they were indeed affected). He didn't even have the biopsy surgery until the following January. Then he was referred to Summit to start chemo/radiation. Following another doctor's advice, we decided to go to Stanford for a second opinion with their tumor board, finally, to UCSF for a third opinion. Both Stanford and UCSF thought he should have surgery first to remove nodes hoping that if they were clear or minimally involved, he could avoid chemo. BUT turns out, he had 4 affected nodes, one with extracapsular spread which forces the chemo recommendation. He had to heal from surgery, and started treatment in april, ended in May--almost a year after he noticed the tumor! My husband is doing fine now with almost no post-treatment issues. I fattened him up as much as i could before treatment and he was able to avoid a feeding tube.

Major delays are very common with this diagnosis for one reason or another. 

I hope you get some good answers and get on the road to treatment. It's tough, but you will get through it.

Helen

Hi Mehrdad, to be honest, the doctors' didn't really know what stage he was at the time of diagnosis. His tumor was at the base of his tongue, it was smaller than 4 cm, so if it were only the tumor, I think he would be considered stage 3. When they took out the lymph nodes and learned that 4 were infected with scc, then his stage was 4. T2N2bM0. Many, many people don't have surgery first and therefore don't know their exact stage. The docs get a sense from size of tumor, suspected number of lymph nodes involved and if lymph nodes on both sides atre involved, but much of the time the stage can't (or doesn't need to be) fully confirmed. And just to add confusion to the mix, in my husband's case, we don't even know if the lymph nodes on the other side were involved, since those weren't removed. 

The fact is, the treatment is generally the same, and with good results. In my husband's case maybe the time spent on waiting to heal from surgery advanced his cancer, but it seems the treatment worked anyway and it should work for you too!

As for the dental issue, I just have no idea. I did ask my husband about the "radiation aware" dentist that he saw and he felt strongly that they didn't know any better than anyone else, much like what your dentist said.  Sorry, I didn't have a lead for you.

I think you should talk to your rad onc about the specifics of what your dentist said, and hopefully he/she will have enough info to give you an opinion. 

If you end up keeping the tooth and need to have it pulled later, I have heard people talk about doing hyperbaric oxygen therapy to help their radiated tissue heal. I don't know anything about it myself. 

Good Luck,

Helen

Mehrdad, my tumor was located on my upper gums, in the back. They pulled three molars and my canine tooth because they wanted to remove the entire tumor and get decent margins. Beyond that, however, the surgical oncologist told me that I had some movement in the three molars, meaning that they were not securely attached to the bone due to the cancerous tissue surrounding them. I had not noticed the same, and believe me, I had grabbed and tried to move those molars every which way. In the end, I trusted the surgical oncologist and I'm glad that I did, because it allowed him to remove more of the area around my tumor. The canine tooth was removed because it was just too close to a reddened area. I now wear an interim obturator with some molars and a canine added and my next one will be even better. 

I have read that dental work can be a challenge post-rads, in that there is an increased risk of bone issues/death down the line. That is why they want you to get all necessary dental work completed before rads. If there is a need for post-rad dental treatment (such as implants, extractions, etc.), then many people have hyperbaric treatments, which help the body heal. I don't know much about this area, because I haven't had to research it yet. 

As for the number of rads, I am having 32 treatments. I just had #6 today. I also have once-weekly lower dose Cisplatin. I'm wondering why Cisplatin, if I could have had less side effects with Erbitux. It just goes to show that no matter how many questions we ask of several experts, we can get caught up in a lot of second guessing. *sigh*  The important thing is to get started. 

It sounds like you are asking the right questions. Listen to the rad onc's feedback, make a decision, and go forward. The sooner, the better.